Family Support – Bills Introduced in Senate and House to Support Caregivers

The bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1719) was introduced in the Senate on July 8, by Sens. Susan Collins (R-ME) and Tammy Baldwin (D-WI). A companion bill (H.R. 3099) was introduced in the House the following week by Representatives Gregg Harper (R-MS) and Kathy Castor (D-FL). The Arc supports the RAISE Family Caregivers Act as it would implement the bipartisan recommendation of the federal Commission on Long-Term Care, that Congress require the development of a national strategy to support family caregivers. The bill would create an advisory body to bring together relevant federal agencies and others from the private and public sectors to advise and make recommendations. The advisory body would identify specific actions that government, communities, providers, employers, and others can take to recognize and support family caregivers, and be updated annually

Family Support – Senate Passes Older Americans Act, Expanding Eligibility for National Family Caregiver Support Program

On July 16, the Older Americans Act Reauthorization Act (S. 192) passed the Senate without amendment. S. 192 is sponsored by Health, Education, Labor, and Pensions (HELP) Committee Chair Lamar Alexander (R-TN), Ranking Member Patty Murray (D-WA) and Senators Richard Burr (R-NC), and Senator Bernie Sanders (I-VT).   Among many other things, the bill includes a fix to the National Family Caregiver Support Program (NFCSP) which provides information to caregivers about available services, assistance in accessing services, individual counseling, support groups, caregiver training, respite care, and supplemental services.   S. 192 would extend NFCSP eligibility to older (age 55 and over) caregivers of their adult children (age 19 to 59) with disabilities. The House is expected to take up the measure in the near future.

Employment – Employment First Policy Promoted

The Secretary of the Department of Labor, Tom Perez, partnered with bipartisan gubernatorial leaders to urge Governors and state governments across the country to adopt Employment First policy. Secretary Perez, Governor Jack Markell (D-DE), and Governor Dennis Daugaard (R-SD) shared a letter encouraging all fifty states to focus on the alignment of policies, practices, and funding resources to prioritize competitive integrated employment as the preferred outcome of day and employment services for all individuals with significant disabilities.

From Small Towns to the White House – The Arc’s Interns Perspective on Celebrating 25 Years of the ADA

By Taylor Woodard and Mike Nagel

UnknownJuly 26, 2015 will mark the 25th anniversary of an important, but too often overlooked, moment in civil rights history: the signing of the Americans with Disabilities Act (ADA). The Arc’s Paul Marchand public policy interns, Taylor Woodard from Junction, Texas and Mike Nagel from Wyndmere, North Dakota, both of whom ventured into the nation’s capital determined to change disability policy, had front-row seats to the White House’s official ADA commemoration. Here is a description of that historical occasion though their eyes.

We were in awe as we were escorted through the halls of the epicenter of U.S. government by various members of the Armed Forces. Once at the celebration, we excitedly wandered through elegant corridors and ornate rooms, nibbled hors d’oeuvres, and mingled with disability community leaders and advocates as we waited for the President’s remarks. Photos and videos do not do justice to the elegance of this magnificent building.

After we had soaked in the scenery for a bit, we made our way to the East Room, where the main event was to be held. We were fortunate to snag front-row seats to hear President Obama’s address. From here, we could see so many prominent figures of the disability rights movement: former Senators Tom Harkin and Bob Dole, former Congressman Tony Coelho, as well as Representative Steny Hoyer, House Minority Whip. Finally, the big moment arrived: President Obama, followed by Vice President Joe Biden, stepped up to the podium and began.

With great passion, the President spoke of “tear[ing] down barriers externally, but…also…internally.”   He continued, proclaiming “That’s our responsibility as Americans and it’s our responsibility as fellow human beings.” For young advocates like us, the President’s words certainly ring true: attitudes in society can be, and often are, barriers in and of themselves. And we, as well as all advocates, must remember these truths as we strive for a more inclusive tomorrow.

In closing, President Obama poignantly outlined the accomplishments of the past 25 years as well as laid a path for the future. For us, this future would include ending unnecessary restraint and seclusion, assuring a high-quality education for all, creating supports and services for people with I/DD to live and work in the community, and protecting rights to self-determination and quality of life.

As the crowd applauded, a very different cheer erupted several thousand miles away in two of the nation’s tiniest rural communities, as our proud parents watched their son and daughter shake the hand of the President, a moment we will never forget.

The Arc Urges Congress to Protect our Social Security Lifeline

Washington, DC – The Arc released the following statement from Marty Ford, Senior Executive Officer, Public Policy, in response to several important developments in Washington affecting Social Security, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI):

“The Arc applauds the Senate, which yesterday listened to the voices of people with disabilities and seniors, and removed a harmful proposal from legislation to reauthorize our nation’s highways, bridges, and public transportation system. The proposal would have partially funded the bill with cuts to Social Security, SSDI, and SSI. Social Security must not become a piggybank to pay for unrelated programs, no matter how important, and beneficiaries cannot afford any cuts to these modest but vital benefits. The Arc will remain vigilant and ready to fight back if any similar proposals arise as Congress continues to debate reauthorization of surface transportation legislation.

“Earlier this week, the Social Security Trustees released their 2015 report on the current and projected financial status of our nation’s Social Security system. The Trustees continue to find that Social Security’s overall health is strong, but that if Congress fails to act before the end of 2016, nearly 11 million Americans who rely on SSDI will face a 20 percent across the board cut in benefits.

“The Arc calls on Congress to act promptly to prevent this catastrophic cut to our SSDI lifeline. A minor, commonsense financial adjustment can ensure that both of Social Security’s Trust Funds will be able to pay full scheduled benefits through 2034, without any cuts to Social Security disability, retirement, or survivors benefits. We applaud legislation introduced yesterday to do precisely that, by paying all Social Security benefits out of a single Social Security Trust Fund: the One Social Security Act of 2015, sponsored by Rep. Xavier Beccera (D-TX) with 22 original cosponsors.

“The Arc urges Congress to ensure that Social Security will be there for all Americans — including people with disabilities and their families — for generations to come, and to reject any cuts to our Social Security lifeline,” said Ford.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 665 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Easy Ways to Infuse Physical Activity into Daily Life

Picture 027Staying physically active, along with eating healthy, is one of the most important things individuals with intellectual disabilities (ID) can do to make sure their body stays healthy and in shape. However, many individuals with ID don’t get the recommended amount of physical activity per week. There are many reasons why individuals don’t get this recommend amount. Transportation issues, not knowing how to get started, and expensive and unaccommodating gyms are just a few.

Being physically active doesn’t mean they have to spend hours in the gym though. Finding small ways in daily life that they can increase their physical activity level will help them to become more active and healthy without having to set aside a lot of extra time, find transportation, or pay expensive fees.

Here are 5 easy ways to help individuals with ID infuse physical activity into their daily life.

  1. Walk – If they are in a wheelchair and can’t walk, wheel.   If they live in community that is save and well paved, walking is an easy and free activity that has many great health benefits!   Make it social and start a walking club in the community or with friends. If it’s close enough (and there’s a safe path) walk to the store to run small errands, etc.
  2. Dance – Turn up that music! Dancing is a great way to burn calories and most of all is fun! Set aside 10-20 minutes after lunch and/or dinner for dance time. It’s a great way to get up after a meal and burn some calories that doesn’t require any special equipment or skills.
  3. Stretch – Waking up ten minutes earlier and allowing time to do some proper stretching will help to get blood flowing and muscles warmed up for the day. Doing this every day will help increase flexibility, decrease injuries, and is a great way to wake up and get the day started.
  4. Garden – Growing and maintaining a garden is a great way to get in some extra activity and learn responsibility. And they’ll have fresh vegetables to show for it!   It also encourages healthy eating and education as individuals learn about what they’re growing.
  5. Utilize TV time – Watching small amounts of TV is OK, but it’s still a lot of sitting time. Utilize the time during commercials to do small exercises such as squats, arms circles, or marching in place. You could even make a game out of it. This will give individuals a few extra minutes of activity per day while watching their favorite TV shows.

Finding small ways to gradually increase physical activity throughout the day will help to get individuals with ID in a happier mind frame and slowly expose them to fun subtle ways to be more active, without making fitness seem like a chore. Gradually, they will start to have more energy and be healthier without even noticing it!

For more information on health and nutrition, check out The Arc’s HealthMeet project, which strives to help individuals with ID improve their health and quality of life.

The Arc Celebrates the ADA’s 25th Anniversary

On July 26th we will celebrate the 25th anniversary of the Americans with Disabilities Act (ADA). The ADA affirms the rights of citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities, and telecommunications. It is a wide-ranging law intended to make our society accessible to people with disabilities.

The Arc played a leadership role in the passage of the ADA. Our volunteer leadership, state chapters, local chapters, and public policy staff worked closely with others in the disability community to make the ADA a reality. The bottom line is that the passage of this transformative legislation would not have been possible without the hard work of Congressional leaders and disability advocates, like you! As we celebrate this monumental achievement and the 25 years of implementation of this law, we can’t help but reflect on what the ADA really means to individuals with intellectual and developmental disabilities and their loves ones.

To commemorate this special anniversary, we asked members of The Arc’s National Staff to share with us what the ADA means to them. You can read a few of the responses below.

We invite you to visit our social media channels, on Facebook (The Arc US) and Twitter (@TheArcUS) and share with us what the ADA means to you. We want you to be part of the larger conversation so be sure to use the hashtag #ADA25.

“I have been a participant in so many meaningful opportunities.  I attended two very highly respected universities; I have travelled extensively, from Kauai to Istanbul to Moscow.  And I interned and worked for a prestigious corporation on Wall Street.  Each of these experiences has been the product of public policy, for I am an individual with a physical disability. It was through the National Business and Disability Council (NBDC) that I secured a summer internship in New York City.  In light of these life events, is it any surprise that I am totally convinced of the power of ADA to transform lives?” – Taylor Woodard, Paul Marchand Intern, The Arc

“I have the ADA to thank for bringing me to The Arc, and introducing me to what has become a life-long commitment to advocating with and for people with disabilities. About 20 years ago, I was hired to direct an ADA project that created materials for criminal justice professionals about accommodations people with intellectual and developmental disabilities need in order to receive fair treatment in the system. This seed money from the Department of Justice eventually led to the creation of a national center in 2013 (see It’s frightening to think how the lives of people with disabilities would be different today without the passage of the ADA. It’s equally exciting to dream about what the next 25 years may hold!” – Leigh Ann Davis, Program Manager, The Arc’s National Center on Criminal Justice and Disability

“I’ve had the honor of supporting individuals with disabilities and their families since 1978. Back then professionals were taught that we knew best. The idea that a professional would ask a parent, let alone a person with a disability, what they wanted out of life was unheard of. Once the ADA was enacted many professionals were slow to support the paradigm shift from institutionalization to specialized services to full community membership. I’m grateful that my world opened. I count myself as a supporter, listener, and friend.  I’m a follower and not a leader. I join in celebrating the fact that more and more people with intellectual disabilities are living full lives in their communities. However, we still have a very long way to go since so many remain ignored and unfilled. So as we celebrate, let’s not forget the 1980 battle cry from Senator Ted Kennedy, ‘For all those whose cares have been our concerns, the work goes on, the cause endures, the hope still lives and the dream shall never die.’” – Karen Wolf-Branigin, Senior Executive Officer, National Initiatives, The Arc

“Having two siblings with I/DD and working as a disability rights attorney, I see the profound value of the ADA in both my personal and professional life. While there is still so much more work that needs to be done to make our systems work better for people with disabilities, much of the progress we have achieved and continue to work towards every day at The Arc and throughout the disability advocacy community would simply not be possible without the vital protections and enforcement mechanisms the ADA provides. I am eager to see what we will achieve over the next 25 years as we continue to use the ADA as a fundamental tool to protect and enforce the civil rights of individuals with disabilities!”- Shira T. Wakschlag, Staff Attorney, The Arc

“The ADA certainly transforms lives, as I can attest to. It has helped me to reach my goals and enabled me to be a trailblazer and set the way for individuals with autism and other developmental or intellectual disabilities. I have had numerous opportunities, one being able to participate in my DD council’s Partners in Policy Making program where I learned how to be a self-advocate and stand up for myself and others. It has also helped me to be employed at one of the most wonderful places to work, The Arc of the U.S.” – Amy Goodman, Director Autism Now, The Arc

Research Is In – Recognizing Disability Leads to Better Outcomes in Criminal Justice System

Adapted for The Arc’s blog by Janet Keeler, Ph.D., Cuyahoga County Board of Developmental Disabilities, Cleveland, Ohio

The Cuyahoga County Board of Developmental Disabilities’ (CCBDD) Forensic Unit and Cleveland State University recently completed a seven-year collaborative research project focusing on the characteristics and offense patterns of 160 individuals with developmental disabilities (DD) in a large urban setting. This kind of research has never been done and conclusions are being used to inform criminal justice work in this community.

The findings are important because far too many people with intellectual and developmental disabilities (I/DD) are in our criminal justice system, with no recognition of their need for accommodations. People with I/DD and other disabilities often find themselves in the criminal justice system due to a lack of awareness of how to identify and meet the needs of this population when law enforcement encounters them as victims, offenders, or suspects. Too often there is little or no consideration for their diagnosis throughout the legal process, leading up to a decision in their case. The Arc’s National Center on Criminal Justice and Disability (NCCJD) is working to change this reality. For resources, training, and assistance, go to

Here are 4 takeaways from the research project:

  1. Early identification of individuals with DD in the criminal justice system is incredibly important. The research demonstrates that individuals with disabilities have better dispositions (the court’s final determination of a criminal charge) and access to targeted service delivery models when disability is identified at the start of the criminal justice process. The CCBDD Forensic Unit has developed multi-system identification methods to detect individuals all across the criminal justice system. This identification includes individuals already eligible for the CCBDD services who are identified via InJail, a shared electronic database with the County Sheriff’s office that provides notification upon booking in all jails in Cuyahoga County. Individuals who are not associated with the CCBDD but could be eligible for services are identified through a questionnaire administered at booking, followed up by outreach services.
  2. Access to trained criminal justice personnel leads to more appropriate outcomes. Through disabilities specific training and one on one consultation on each case, the Forensic Unit assists the specialized mental health/developmental disabilities (MH/DD) court personnel to understand individuals’ statuses, needs and the risks they face while incarcerated. The Forensic Unit liaisons are dispatched upon identification to support those individuals with disabilities who find themselves in the Cuyahoga County Corrections Center and assist with the challenges of being incarcerated. The forensic liaison meets and assists individuals in acclimating to jail, consults with attorneys and judges, and attends all court hearings until completion of the case, with the goal of collaborating in the process in the best interest of the individual. Due to this approach, many individuals in this study were sentenced to community control, an alternative to prison that usually involves intense monitoring and sometimes confinement to the person’s home rather than jail or prison.
  3. Repeat offense rate drops for those with access to disability supports. When successful service delivery models are used for people with disabilities in the criminal justice system, recidivism (the incidence of committing another crime that leads to re-arrest, reconviction or return to prison) is most often used to determine the success or failure of individuals sentenced to probation. This research study revealed very different recidivism rates for individuals who received specialized services – 14% re-offended, versus 28% of those individuals who experienced the process without appropriate access. The two factors attributed to this difference were the personal attention and additional advocacy in the process from the Forensic Unit liaisons and the impact of the knowledge of the judges who were trained in working with defendants with disabilities.
  4. Training criminal justice professionals can make all the difference for individuals with disabilities. This research confirmed that criminal justice professionals exposed to disability-specific training results in better outcomes for individuals with disabilities. And in addition to judges, lawyers, as well as probation/parole/corrections officers, training should be provided to school personnel (School Resource Officers or SROs), police departments, treatment professionals, and victim assistance agencies staff in order to facilitate communication, collaboration, early identification, and ultimately effective service provision for people with disabilities.

This groundbreaking research has led to many more questions to explore for the research team. The NCCJD staff would like to explore ways to gather data nationally on the number of people with I/DD who are in prison. We also need further research on what comprises effective training on disability issues for criminal justice professionals. What exactly made THIS training effective in reducing recidivism? It begs the question – what is more important, the “personal attention” or the training?

For a more in-depth look at a sub-topic in criminal justice and I/DD, join NCCJD on July 30th from 1:30-3:30 for their white paper release and accompanying webinar, “Sex Offenders with Intellectual and Developmental Disabilities: Problems and Solutions from Around the Nation.” Register here:

White House Conference on Aging: A Critical Moment for Individuals with I/DD and Aging Americans

The White House Conference on Aging will be held on July 13, 2015, during a momentous year in which we mark the 80th anniversary of Social Security as well as the 50th anniversary of Medicare, Medicaid, and the Older Americans Act. The conference provides an opportunity to discuss these critical programs and find ways to strengthen them to continue to serve older Americans in the next decade.

These programs not only serve older Americans, but they also serve people with intellectual and developmental disabilities (I/DD). At The Arc, we are committed to advocating for people with I/DD and their families. This means ensuring that individuals with I/DD have services in place throughout their lifespan and that aging caregivers of people with I/DD have the support they need.

We spoke to advocates and caregivers to ask them what issues need to be addressed at the White House Conference on Aging. Here are their questions:

Carla Behnfeldt: I am 55 years old and live in Pennsylvania. My parents, who are in their 80s, and my 57 year old brother who has intellectual and developmental disabilities, all reside in upstate New York. My parents worked hard to find a good group home for him near their home and to get him Medicaid long term services and supports. Due to their age, my parents are in need of more and more support from me, and I would like for us all to live close together. I looked into having my brother move to Pennsylvania. I was shocked to learn that he might have to wait years to receive Medicaid services in Pennsylvania. And, there is no guarantee that Pennsylvania would provide him the services that New York does. My parents won’t move if my brother can’t move. The fact that my brother’s services can’t be transferred between states makes it very difficult for me to become my brother’s primary supporter and to provide my parents with the care they deserve as they age. What are your proposals to make Medicaid benefits portable between states?

Margaret-Lee Thompson

Margaret-Lee Thompson

Margaret-Lee Thompson

I am 70 years old.  For 21 years, I worked as a parent coordinator at The Arc of King County in Washington State. Our son Dan, who had Down syndrome, died when he was 36.  Many of the parents I worked with are in their 70s, and their children with intellectual and developmental disabilities are still living at home with them.   Their sons and daughters are middle-aged now, and when the family tries to get the government support that would enable the son or daughter to move into a new living arrangement, the families are told that they need to go on a waiting list.  These lists are often a decade or more long. The Community First Choice Option created by the Affordable Care Act, with its additional federal matching funds in 2014-15 will allow our state to be able to have the funding to move 1000 individuals onto our Basic Plus Medicaid Waiver.  But there are still 10,000 individuals and families in our state who have NO PAID SERVICES. The senior families have waited the longest. Many have simply given up asking for help. This is just wrong. It is not uncommon for the individual to lose their last parent, be moved from their home and be moved in with people they have never met – all on the same day. The parents should be able to support their sons and daughters while they transition to a new home. What are you doing to change things so these parents can live out their senior years with a sense of peace and comfort in the knowledge that their sons and daughters will live a good life after they are gone?

Pia Muro

Pia Muro

Pia Muro

I am 70 years old and live in Tustin, California. My younger daughter, Crystal, is 29 and has Down syndrome. She works at a senior center and lives at home with me. We’ve started the planning process as a family to make sure she continues to live a happy and independent life when I’m no longer able to provide support.

English is my second language and the planning process can be difficult to understand. What is being done to make sure that people from different backgrounds can get support from people who speak our language and understand where we are coming from?

Carrie Hobbs Guiden, Executive Director, The Arc of Tennessee

Carrie Hobbs-Guiden

Carrie Hobbs Guiden

There are nearly a million families in the United States in which adults with intellectual and developmental disabilities are living at home with an aging caregiver. Most do not have a plan in place for what is going to happen when these caregivers are no longer able to provide support.   There are many barriers to planning – including fear – but it is important that families make a plan for the future. They should gather information about the family’s history and wishes, and they should explore housing, employment and daily activities, decision making supports, and social connections.   What are your proposals to help these families to plan for the long term needs of their adult children with disabilities?

The Arc’s Center for Future Planning aims to support and encourage adults with intellectual and developmental disabilities (I/DD) and their families to plan for the future. The Center provides reliable information and practical assistance to individuals with I/DD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning. Visit the Center’s website at for more information.

SSDI: Time for Action!

A lifeline of financial security for millions of Americans with disabilities, Social Security Disability Insurance (SSDI), is currently under attack. Congress must adjust SSDI’s finances by the end of 2016 to prevent a devastating one-fifth across-the-board cut in benefits. Writing in the Journal of Health and Social Work, The Arc’s T.J. Sutcliffe makes the case for how social workers and other professionals in the field can and should support necessary action to strengthen and preserve this vital support for people with disabilities and their families.

Sign up for The Arc’s Capitol Insider weekly e-news and periodic Action Alerts to stay informed on the latest developments and take action to support the SSDI lifeline.